Frequently Asked Questions

​​1. How do I get evaluated for CCI/AAI and related conditions?

See the diagnosis page for information about neurosurgical evaluations and potential regenerative medicine possibilities.

​​2. I have ME, but I don’t have any breathing issues or neck symptoms. Does this mean I can’t have CCI/AAI?

Plenty of people diagnosed with CCI/AAI have no breathing symptoms. Some have no overt neck symptoms. While breathing problems and neck symptoms can occur as a result of CCI/AAI, they are not universally experienced, and they are not required for a diagnosis of CCI/AAI.

So yes, you could have CCI/AAI even if you have "only" the typical ME symptoms: POTS, Post-Exertional Malaise (PEM), etc. Using myself as just one of several examples: I had classic ME for three years, and during that time I had no breathing problems or overt neck symptoms. Those only emerged following a minor dental surgery that placed considerable strain on my neck.

​After my fusion, it became clear that CCI/AAI had been the underlying cause of my ME all along, even during my "mild" years when I could still attend school and had no neck or breathing problems. Correcting my CCI/AAI eliminated all of my ME symptoms, the including POTS and PEM that I experienced in the years prior to having overt neck symptoms.

3. I had an MRI/x-ray/CT scan. I was told that it was normal. Is there still any chance I could have CCI/AAI?

Yes.

​Here are some published articles discussing the reliability of radiology reports:

1. This 2017 article demonstrates that radiology errors are surprisingly common, with the study finding a miss rate of 43.6%.

My own personal experience, as well as the experiences of hundreds in our community, has shown this to be true. Our MRIs were very often read as "normal" but were later found to have significant abnormalities that were missed in the radiology report.

During my years with ME, I had several MRIs, all of which were read as "normal" by radiologists and other MDs who did not know to explicitly check for CCI/AAI. This problem is systemic. At this point in medical history, radiologists are not broadly trained to think about or to recognize CCI/AAI outside of the context of a high-impact trauma. Jen had a similar experience in which her MRI was reported as being "normal" (when it wasn't normal!), and so have many others.

This is similar to how people with ME often have routine lab work read as "normal" by a general practitioner, but then, if they see an ME specialist, the specialist will run more sophisticated testing that uncovers various pathologies. ​The situation with CCI/AAI is analogous to this. I look forward to the day when this is no longer the case, and many of us are actively working to make that day come sooner.

If you're seeking to effectively rule out CCI/AAI, you can consult a CCI/AAI-literate neurosurgeon. Here’s a list of them. Alternatively, you could consult regenerative medicine doctors. Some in the community have recently had stem cells (autologous mesenchymal) injected into their lax ligaments. This is an emerging field.

4. I have ME. What symptoms should I be aware of that would suggest CCI/AAI?

Consider the possibility that both POTS and PEM can be caused by CCI/AAI. In my own experience, Jen's experience, as well as many other's experiences, we all had ME, PEM, POTS. We all tested positive for CCI/AAI. Many of us improved after our fusion surgeries, with some, such as Jen and myself, going into full remission from ME/PEM/POTS. In short, if you have ME, then CCI/AAI could be something to check for, even if only to rule it out, just as you might choose to rule out sleep apnea or a thyroid problem.

5. Are there any non-surgical treatments for CCI/AAI?

This is a great question. I can describe for you patterns that I and others have seen within the community.

Regenerative Medicine: ​As of January 2020, multiple people in the ME and EDS communities -- with CCI diagnoses -- have reported significant symptom improvement, to include POTS and PEM, after having stem cells (autologous mesenchymal) injected into their lax ligaments. Some have experienced enough improvement to avoid a fusion surgery, some have reported modest improvement, and some have reported no improvement. This stem cell procedure is currently considered experimental, and there is now an ongoing double-blinded randomized controlled trial. In my opinion, the emerging field of regenerative medicine is quite promising! More to come on this topic.

Some people have also reported benefiting from the following: strengthening their neck and shoulder muscles, bracing their neck with a cervical collar, and undergoing intermittent cervical traction. As with most things in life, there are potential risks/benefits involved with any course of action.

Strengthening: Many people with ME are barely able to tolerate any physical activity, including simple neck muscle strengthening exercises. Others, however, have shared that they can tolerate isometric neck muscle strengthening in varying amounts. Before doing anything like this, please consult a medical professional who understands your unique situation. Range of motion neck exercises are generally not recommended by CCI-literate physical therapists, and I'd suggest you consult one of those if you suspect a structural problem in your neck or craniocervical junction. Excessive range of motion is the entire problem in CCI/AAI.​Cervical collar: A cervical collar doesn’t seem to often help with core ME symptoms. For example, it didn’t relieve my POTS or PEM, but it did help me and others somewhat with our dizziness. I do know of one ME patient who reported that her POTS became less severe while in a cervical collar. Your situation might be similar, or it might be very different.

A cervical collar is a medical device. Per the instructions of several expert neurosurgeons, a cervical collar generally shouldn't be worn for more than four hours per day, as it can weaken the neck muscles over time. According these neurosurgeons, a collar may provide some temporary benefit, but in the long run it can make your craniocervical area even more unstable by weakening your stabilizing neck muscles. So, proceed carefully.

Cervical traction: The safest way to do this is under a care of a skilled physical therapist. If you're fortunate to have friends or relatives available, some PTs can teach them how to do this safely. Some self-administered methods include buying an inflatable cervical traction device or an over-the-door device.

​Prior to my fusion, I tried all of the above. Manual traction from a licensed physical therapist helped me the most, followed by the inflatable cervical traction device. I saw no benefit from the over the-door traction device, and it struck me as being a riskier method.

Bottom line, when it comes to cervical traction, consult with someone who understands your case very well. Some people with ME find that they feel great in traction and then, understandably, start to overdo it. For some, this has resulted in their baseline symptoms getting worse when not in traction, often referred to as a "rebound." This can happen because repeated traction can loosen the ligaments over time, worsening any pre-existing CCI/AAI. ​The last thing you want to do is harm yourself by putting excessive strain on your ligaments and neural tissues. If you decide to try cervical traction, start slowly, don't overdo it, and pay close attention to how your body responds.

Want Updates?
As information advances, and as my story unfolds, I will periodically update this site.

If you'd like to receive email updates, sign up below.

I will never spam you.

This website is for informational purposes. Nothing on this site should be construed as medical advice, as I am not a licensed medical professional.